For two years, she was treated for tuberculosis, then doctors said she had lupus

•‘My kids know that I avoid bright lights, so if they want to switch the lights on, they tell me to move away first’

Mrs. Fausat Bukola Sanusi’s life story is not a simple medical case. It is a long journey through childhood illness, repeated misdiagnosis, cultural misunderstanding, emotional suffering, and eventual clarity through proper medical diagnosis.

Today, she speaks openly as a lupus warrior living with systemic lupus and its complications, including calcinosis. Her voice now carries a larger purpose, to educate, correct misconceptions, and support others living with similar conditions.

Her story reflects how chronic illness can remain hidden for years, how families struggle to understand what they cannot see, and how medical awareness can completely change the course of a person’s life.

Mrs Sanusi begins her reflection with one of the most painful realities of her current condition.

“Today, there are stones in my body. Doctors said it’s calcinosis. They sit in my body and the only solution is plastic surgery,” she said.

Calcinosis is a condition in which calcium deposits form in soft tissues beneath the skin. For her, these deposits feel like hardened stones lodged around her back and upper body.

They do not appear predictably. Sometimes they come quietly. At other times, they surface with sharp pain that feels like pins pressing from inside her skin. Doctors have explained that surgery may be needed to remove some of the deposits, but even that does not completely remove the unpredictability of the condition.

For Mrs Sanusi, a mother of three, this is more than a medical diagnosis. It is a daily negotiation with her body.

But her story did not begin with calcinosis. It began with a child who was always sick, in a world that did not yet know what to call her illness.

She recalls being frequently ill as a child, with every episode treated as something familiar — typhoid fever, infection, or general weakness.

“The fever, the weakness, the stomach pain, whatever it was, it always came back,” she said.

“I was 10. I celebrated my 10th birthday managing typhoid fever.”

Her childhood was shaped not only by play and school, but by recurring hospital visits and treatments that never addressed the real problem. No one suspected that an autoimmune disease was already active in her body.

At the time, the illnesses became normal. But looking back now, she sees what no one recognised then, that her body had been signalling something more serious for years.

Unfortunately, many children living with lupus go through similar experiences. In many communities, repeated illness is often misunderstood or dismissed rather than properly investigated.

According to her, lupus does not always suddenly appear in adulthood. In many cases, the signs begin early in life but are simply not recognised.

“Many times, she would have been falling sick. In fact, she would have been called abiku,” she said.

Like many families trying to understand chronic illness without clear medical answers, hers also turned to explanations shaped by culture and belief systems. When hospitals could not provide clarity, other options were explored.

She remembers being taken to different places and through different processes in search of healing.

“In one case, they wrote my name on a chicken… a lot of things I went through,” she recounted.

She was only a child then and did not fully understand what was happening around her. She only knew that adults were desperately trying everything possible, including rituals and symbolic practices, to stop the illness that kept returning.

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In those moments, medicine and tradition overlapped in her life, not because her family rejected science, but because they were searching for answers wherever they could find them.

Looking back, she now understands that those actions came from love, fear, and hope. But they did not address the medical reality of lupus.

For over two years, Mrs Sanusi was also treated for tuberculosis because doctors believed it explained her declining health.

According to her, the prolonged treatment later contributed to the calcium deposits that formed beneath the skin of her back and upper extremities.

The turning point came when some doctors began studying her symptoms more closely. Instead of treating each symptom separately, they began to recognise a pattern.

“The dermatologist was the first set of people that knew I had lupus. That was after my first baby,” she said.

The diagnosis finally connected years of unexplained symptoms — recurring illness, fatigue, rashes, pain, and physical weakness.

One of the most distressing symptoms she experienced was severe skin rashes.

“I had rashes on my face, the upper extremities, and my back. These rashes were not mild. At certain points, they became severe and widespread. The rashes were as big as the size of an egg,” she said.

She explained that lupus skin reactions can become extreme, especially when triggered by medications, stress, or environmental exposure.

The visible symptoms affected her confidence and comfort, making even simple activities difficult at times.

But beyond what people could see, lupus created another layer of suffering — invisible pain, fatigue, inflammation, joint pain, and emotional exhaustion.

Mrs Sanusi said this invisible suffering is often misunderstood because patients may appear healthy externally.

“You cannot even see it. But it is there,” she said.

This disconnect between appearance and reality has been one of the most emotionally painful parts of living with lupus.

She explained that lupus can interrupt the most basic parts of daily life. There are days when pain and fatigue make movement difficult. Some days require complete rest, while others allow only limited activity.

Lupus, she said, is deeply unpredictable. It forces constant adjustment.

“There are moments when exhaustion becomes overwhelming, not because of lack of effort, but because the body simply refuses to cooperate,” she explained.

“As I’m sitting here, I have four bands at my back,” she added.

The support bands help her function physically, but once they are removed, the discomfort returns.

Sadly, one of the most painful parts of her experience has been how people misinterpret her condition.

She recalled moments when people assumed she was enjoying a glamorous life because they had not seen her in public for some time.

“Some people assumed my husband had sent me on holidays to the USA,” she said.

In reality, she had withdrawn from social activities because of pain and ongoing medical treatment.

These misunderstandings created emotional isolation because people could not see what she was truly experiencing.

Over time, Mrs Sanusi learned that lupus management requires personal coping strategies. There is no single method that works for everyone.

According to her, every lupus patient must gradually identify personal triggers and develop coping techniques suited to their body.

“What works for one person may not work for another,” she said.

This understanding, she explained, helps patients take ownership of their care and adjust their lifestyle according to their body’s responses.

Mrs Sanusi strongly believes that no one should face lupus alone. Support systems, she said, are essential for both survival and emotional strength.

“My kids know that I avoid bright lights, so if they want to switch the lights on, they tell me to move away first. Also, when anybody is cooking, they remind them that I react to some food seasonings,” she said.

However, she makes a clear distinction between sympathy and empathy.

According to her, sympathisers often offer pity without practical understanding, while empathisers provide encouragement and realistic support.

“Empathisers will tell you: go out, but take your umbrella and take your sunscreen,” she said.

That type of support allows lupus patients to continue living fully instead of shrinking away from life completely.

Despite her challenges, Mrs Sanusi has transformed her pain into advocacy and purpose.

She encourages others not to see illness as the end of life, but as a reality that can still coexist with productivity, creativity, and meaning.

She speaks about entrepreneurship, creativity, and community work as ways lupus patients can continue contributing meaningfully despite physical limitations.

According to her, life can still remain productive and impactful.

Mrs Sanusi also emphasised the importance of lifestyle modifications, including proper rest, balanced diets, reduced junk food consumption, and protection from sun exposure.

“Sunscreen should not be a thing of selection. It should be for everybody,” she said, explaining that sunlight can trigger severe lupus rashes.

She also shared personal views on diet and immune response, noting that some patients may benefit from avoiding foods such as garlic.

Through the Lureg Support Foundation, Mrs Sanusi continues to educate families, patients, and communities about lupus awareness, emotional support, and early diagnosis.

She shares her experience not as theory but as lived reality.

“For me, lupus is not just a diagnosis. “It is a life. A difficult one, but one that still holds meaning,” she said.

Her advocacy focuses strongly on early diagnosis because greater awareness can help reduce years of misdiagnosis and delayed treatment.

She encourages families to pay attention to repeated childhood illnesses and seek proper medical evaluation early. She also advises people living with lupus to join support groups within their communities.

For improved care, she called on the government to establish specialised lupus treatment centres with multidisciplinary teams capable of managing autoimmune diseases comprehensively.

Ultimately, Mrs Sanusi’s story is one of survival, adaptation, and meaning.

From childhood illness to chronic pain and calcinosis, her journey reflects both struggle and resilience.

Her message to others living with lupus remains simple but powerful: “Don’t just exist. Live. Turn your pain into purpose. Speak up. Don’t suffer in silence.”

She also encourages patients to delegate tasks when necessary and explore flexible forms of work that suit their health realities.

She talks about people who started small businesses from home and gradually turned them into sustainable income streams. She talks about creativity born from limitation. She talks about survival becoming strategy.

Through her voice and advocacy, Mrs Sanusi continues to show that even with a lifelong condition, life can still hold dignity, strength, and purpose.